Recently diagnosed with Essential Thrombocythaemia

[Purplelady2]

My 76 yr.old husband has been diagnosed with this and soon will have to start treatment with Hydroxyurea. He had no symptoms and the diagnosis was found after random blood tests. I am very concerned how this drug will affect him particularly where driving is concerned as we live an hrs drive from our grandchildren whom we regularly look after. I would appreciate any help or advice.L

[hunter5582]

While hydroxyurea can have a variety of adverse effects, it would be unusual for these to affect the ability to drive. Normally, he would have the choice of either hydroxyurea or Pegasys to treat ET, but Pegasys is currently in short supply. He can always try hydroxyurea and see if it works for him. If not, then he can always change to a different medication.

You will likely hear a variety of different reactions to HU. Some tolerate it and can benefit. Others cannot. I am one of the latter. I have done much better on the interferons. Note that while I was refractory to and intolerant of HU, the adverse effects did not affect my ability to drive. We are all different in how we respond to these medications. My response does not predict anyone else's.

Here is some information about hydroxyurea that is important to know.

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

ethrombo.blogspot.com/2017/...

Wishing you both all the best.

[Cedra]

I'm 71 and was diagnosed a few years ago. Like your husband, I have no symptoms. My haematologist wanted me to take HU but I decided against it and am just taking low dose aspirin. I have a CALR mutation, which has a lower risk of thrombosis, and have no other health problems. I reckoned that the risk of side-effects was greater than the risk of thrombosis. At my age, quality of life is more important to me than the length of it. So far, I've had six drug, symptom and side-effect free years.

[Frances1903]

Good wishes!The medication is carefully monitored so hopefully your husband will be fine on his Hydroxyurea.I have taken the meds for over 6 years and been very well looked after by the haemo team.Take care and please use this forum,everyone so helpful.

[Ovingite]

I am a 75 y o male and was diagnosed with ET in 2017, and just like your husband it was as a result of a routine blood test. I was prescribed hydroxycarbomide and have been on it ever since, with no real issues. The good news is that hydroxycarbomide has kept my condition under control and I am virtually symptom free and ET has very little affect on my lifestyle.I found this forum to be invaluable in the early stages, as there are lots of friendly and supportive fellow sufferers to answer any questions you have.. The MPN Voice website has a wealth of advice on all aspects of the disease and tends to be our 'bible'. Mpnvoice.org.uk

[lizzziep]

I’ve had various drugs over the years for ET and now MF and none of them have affected my driving, hydroxy will keep platelets etc under control.

[Ipadlin]

I was diagnosed in a similar way 12 months ago and at 73 was alarmed at the prospect of taking hydroxy. I’ve had very few side effects and have lived a normal life since, including visiting our grandchildren who live two hours away.!

[gardner99]

I'm 67 and like your husband was diagnosed in 2023 following routine blood tests showing high platelet count. I've been on Hu & aspirin for about a year, and apart from some afternoon tiredness I haven't had any other symptoms. We lived a 3 hr drive from our grandchildren and I found this easily manageable. We have since moved nearer so just 40 mins away now.I find that as long as I'm doing something, whether driving or another activity I'm fine as far as theafternoon lull goes.

It affects people differently as I'm sure you'll know by now, but there would be alternatives if it wasn't suitable for your husband so best just to try it out. Good luck to you both.

[Purplelady2]

Thank you for all your comments which were very helpful. I'm also concerned that you are supposed to keep out of the sun as we will be going to Cyprus later on in the year with the family. My husband has always loved sitting out in our garden .

[Leveret20 in reply to Purplelady2]

It is important to keep out of the sun - or to keep the sunlight off you. You can do this with a wide brimmed hat that does not let light through and maximum protective sun cream. It's always a balance or a compromise between protection and living life!

[SueYoung]

I’m 64 with ET and been on Hydroxy for about 2 years. I feel fine and platelets are under control, it’s a little bit of a balancing act for other parts of the blood numbers to keep all within ranges. It does not affect my driving ability in any way. Everyone reacts differently. Hope your hubby does well on hydroxy. Good luck 🤞

Sue

X

[Meatloaf9]

Hi, I was diagnosed in 2017 with ET, now have PV. Before the diagnosis I would have some dizziness or a feeling that I was going to pass out (never did) while driving. After I started aspirin I never had another episode. I now take aspirin and HU and have still never had that feeling again. Best to you.

[katiewalsh]

Hi. I’ve been taking HU for 10 years without problems driving or other things. I was reluctant to start it but I had almost died when my lungs filled with blood clots (from my undiagnosed MPN) & realized my risk of future problems was too great. Your husband should keep the sun off his body. Besides a wide brim hat there is clothing that has a SPF treatment. Please feel free to post any questions you have. Have a wonderful trip. Katie

[George1976]

If he’s not having symptoms associated with ET like dizziness or headaches, he might ask his doctor if perhaps he can just take some aspirin daily. Just a suggestion as it’s always better to take as few meds as possible.

[saltmarsh]

As you can see from the posts, many of us haven't had bad experiences with HU. I'm 78, been on it for 3 years and it's keeping my numbers in a good range. No issues with driving. But we are all different in how we each respond to HU. So give it a try, and just monitor how things are going. I've always had a sensitive stomach and I only take it after meals with lots of water. I'm not on any other prescription meds so that may help. Also, it can contribute to fatigue so I've found it's important to take a break when I start to get tired. Very best wishes to you and your hubby.

[kitttycat]

I have been taking hu for four years. I am older than your husband. ET discovered the same way. Nothing changed. Nothing happened to me. Best wishes.

[LeoTravels]

Hi from Sydney Australia,

I have been taking Hydrea for 3 years now with no side effects, I am 61 years of age and take lots of other medication also. It is important to have your Haematologist monitor your platelets regularly- once they start to get high (mine shoot up to 1,000 without Hydrea) you are at risk. I also feel significant effects of lethargy when my platelets are that high.

All the best to you x

[Tipsy2023]

morning

I have concluded that if you have no symptoms pre diagnosis

you often continue that way .

Apart from fatigue . Purely anecdotal

I had lots of varied symptoms with vision and brain fog circulation etc etc so many of those got better on clopidigrel and then Hydroxycarbamide controls platelets for me very effectively though fatigue is an issue.

Sun definitely he needs to use sunscreen .

Stay positive keep enjoying the Grandchildren they really increase the Joy in my life.which has to be a good thing . L

[Planting]

hi

I’ve got Et and have taken hydroxy urea for 7 years it keeps the platelet level steady and my side effects are afternoon tiredness sometimes and weight gain. Everyone is different. If your consultant suggests you take it then I would do so. I live a full life , try it and it may well be your life saver. If not discuss with your consultant. I’m 82 so any “side effects” may be due to the fact I’m getting old and refuse to recognise it!

Good luck keep on this website

[Purplelady2 in reply to Planting]

Thank you for your comments. My husband will be starting medication in a few weeks. I am concerned about him getting fatigue. I also read about having to flush the loo twice as the toxins can be present in bodily fluids. This was on Google so perhaps not accurate.

[Planting in reply to Purplelady2]

Never heard of that. Although hydroxy does appear in the urine. Presumably so do other drugs. Flushing the loo twice to is new to me. Be interested to hear Hunters view on this

[hunter5582 in reply to Planting]

It is true that HU passes into various bodily fluids. It is important to protect others not taking HU from accidental exposure. This is why there is a recommendation to use a condum for couples who are sexually active. Exposure to blood is a concern but is always a concern anyway. I have never heard of a need to flush twice and cannot imagine why that would be necessary.

[Scottishterrier in reply to hunter5582]

Hi Hunter 5582

[Scottishterrier in reply to hunter5582]

It is true I have been on it since 1999 and I was told by my haematologist consultant that I could not have children because it causes fetal abnormalities and the children to be born malformed and also does also say on the leaflet if anyone other than you is giving you an Hu they have to wear surgical gloves as it gets absorbed through the skin into the bloodstream Stay safe

Scottish terrier

[hunter5582 in reply to Scottishterrier]

That is correct. HU is teratogenic and mutagenic. If someone who has been on HU wants to have a child, it is recommended that males wait 1-year and females wait 6- months. Further, HU can cause hypogonadism - oligospermia/azoospermia in males. While this is usually reversible, it is not always reversible on discontinuation. Males who wish to have children in the future are advised to use sperm banking to ensure they can still have children. Unfortunately, not all providers review this information with patients when prescribing.

It is also correct that caregivers should wear gloves when handling HU or the bottle. It can cause skin irritation and other issues. For those taking it, handwashing before and after handling HU is very important to avoid exposing others to the HU. It is also important to ensure that no one else in the home is exposed to HU, particularly in homes with children.

HU can be handled safely in the home with appropriate cautions. It is the responsibility of the person using HU to ensure that it is handled properly.